Monthly Archives: April 2011

Holding the precious lei presented to her by her beloved (and lovely) Auntie Merle at church today. I only wish you could smell it!

I really, really, really LOVE my dad!

…and my puppy really loves me!

Easter 2011….the boys still hate taking photos!

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With 3/4 of my sons….we missed you Chase!!

Easter provides me, at last, respite from a week that has left me feeling like I’ve lived through seven days of spin cycle. I don’t think it a coincidence that as I celebrate the sacrifice that has led to new birth (Oh, Death…just where is your sting???), the birth of new insights, paradigms, outlooks, and plans with regard to Abbie’s body is calling us to somber recognition, determined sacrifice and faith-based rejoicing.

I met Leonid Blyum, the inventor of ABR, and researcher Mark Driscoll, at their hotel one week ago. I was slated to introduce them at the Pacific Rim International Conference on Disabilities the next day, so I wanted to touch base to see if there were any particular things they wanted me to highlight.

OK — that was part of the reason. The more honest explanation is that I wanted to check them out. I had invited numerous people to the conference to hear them, and wanted to know ahead of time if I’d made a huge mistake. Within five minutes, those concerns evaporated, and I knew I was in the company of men who were going to stretch my mind, and hopefully, change Abbie’s path.

I have learned so much this week, and feel compelled to share it with other brain-injury families. So, I will break it into installments. Yes, it is about Abbie, but from the beginning, where possible, Ray and I have committed to make this journey matter for ALL children who are in Abbie’s position. Thankfully, what I learned about Abbie this week translates very easily to all children recovering from brain injuries.

I will be writing about: The “Lavish” versus “Thrifty” approaches to rehabilitation [which explains the basis for ABR, and also why traditional rehab doesn’t work for severely impacted people]; the differences between CP and acquired brain injuries in regards to physical rehab; the value of stillness; why we can’t solve the secretion problem; Abbie’s biggest challenge (which is not unique to her), “Fake Strength”, and where we go from here, as a family and as a state. So, stayed tuned for all that.

On this day, though, our thoughts go to our families spread out on the mainland, and to friends we’ve been blessed to have far and wide. With such a profound reason to celebrate, we wish we could all be together today….but, that Day is coming!!

I just received pictures taken of Abbie while we were making the mold for her new wheelchair. They give a good idea of what she will look like when she does get her new throne, eventually.

In this first picture, the therapist’s hand at the back of Abbie’s head is doing the job of a head rest, so this is how Abbie will look from the side when seated:

The mold will have full contact with her back, pelvis, ribs, and legs, so she will just need a lap belt to help keep her safe, most likely. Quite a difference from the lap/lateral/chest strap contraption we have to use now!

Being seated in a position that allows her to look straight ahead rather than at the sky, as her current chair positions, results in much more visual engagement from Abbie.

Once we had a good shape around her, we took her out and they filled the whole mold with plaster. So, a perfect copy of Abbie’s little okole is sitting right now in the rehab department, waiting for the green light to be sent off to the seating company.

Here’s a snapshot of Abbie right before we went on our very short walk in the woods during out trip to Washington:

Abbie and Genevieve, at what ended up being our turn-around point. Notice how different Abbie looks seated in this chair opposed to the mold above. She’s tired of looking at the clouds!!

Please continue to pray for Genevieve’s mom. They have been able to extubate her, she has spoken a few words, but it extremely weak, very disoriented, and it the very early stages of what is going to be a challenging journey of recovery. If she is anything like her daughter, though, there is MORE than enough fight in her spirit to make it back.

Many times, as I meet someone, or as someone I know first learns about the details of Abbie’s journey, one of their first sentiments is, “I could never make it…” Before it happened to our family, I thought the same thing. But, one of the things I’ve learned is that extreme trauma, grief and challenge don’t have to break your heart permanently, but they do change the shape of it forever.

The basement expanded by the flood of tears is matched in scope by the altered top floor with improved views of grace, joy, and love. Nothing is ever the same — and for that, in fact, I am utterly grateful. The lows are truly lower than I can describe, but are matched by equally unfathomable highs. Living with an enlarged heart means that each day may include volleying back and forth between the two several times. That was certainly the case this week.

Gratitude

Abbie’s adventure has led our paths to cross with the most amazing, kind, compassionate people, and I’d like to introduce you to a group of them I met this week.

This photo is the second-semester carpentry class at Honolulu Community College, with their instructor Dean Crowell (blue shirt with white stripes).

A couple months ago, when a group of six families was working at warp speed to bring the ABR therapy to Hawaii, we were trying to figure out how to build special ABR “benches” for each of our kids. We could not proceed with the pilot group without them, but there wasn’t a carpenter in our group.

One of the moms, Shari, had the brilliant idea to call HCC to see if it would be an appropriate project for them. Immediately, James Niino, of HCC asked for more information, and within a couple of days said, “Sure, we would love to do it!”

It’s hard to describe what a relief this was. James would have the carpentry class build the benches, and then the families would only have to upholster the padding and sand and finish the bench. The plans we’d received from Montreal were not completely clear, so Dean Crowell used his expertise to fill in the blanks, and we planned to pick up the benches on April 1.

In early March, James called and said….”You know, as we look at these benches, the upholstery is going to be pretty tricky. So, I’ve talked to our upholstery instructor, Donald Frost, about it — he is going to donate the foam and vinyl and they will do the upholstery.”

Another big sigh of relief! All we would have to do was sand and finish — that, I felt pretty confident, we could do.

Kyle and I went to pick up the benches on Wednesday, and got to meet the whole class. As I looked at the benches, I noticed they were pretty shiny for unfinished wood. Only….it wasn’t. They had finished them for us, too.

I was pretty overwhelmed by their thoughtfulness, and tried to explain to the students what their work meant. I failed utterly at eloquence, and just said the benches were for a special therapy for many children who used wheelchairs, in the hopes that one day they wouldn’t.

It was a humbling experience where my spirit just drank in the compassion of others. Hawaii is a very special place, and as one of the students told me, “This is what we do for each other. We are ohana…”

Mahalo Nui Loa to James Niino, Dean Crowell, Donald Frost, and their students — you’ve built more than six benches, you have bolstered the spirits of six families who are each on a very long trek.

Joyful Anticipation

“Always for a reason” is what I’ve learned about delays. I try to hang on to that lesson when frustration and impatience creep in. Many hours this week were spent in appointments about Abbie’s future wheelchair.

On Tuesday I met with a local vendor, Frank, for almost three hours to talk about Abbie’s seating needs and the right power base for her. The most powerful insights came when Frank let me drive a couple of power chairs down the hall to experience the difference for myself.

Observation #1: driving a power chair is not as easy as it looks. In fact, I was pretty horrible at it (which in no way relates to my car-driving ability:). It gave me a lot of empathy for what faces Abbie as she learns to control one with her head. Generous amounts of time and patience will be needed; avoiding expectations of her hopping in and taking off in a matter of weeks.

Observation #2: the seating Abbie needs cannot be made by anyone in Hawaii. The insurance company does not agree yet, but we’re working on it. In very good timing, the vendor from San Diego, Kevin, was here again this week. We took a new mold of Abbie’s body, since she has grown since the last one was taken in December and we have no idea how long the approval process is going to take.

The mold we got this time was even better than the first one, and seeing her sitting in it was a joyful moment…truly, she looked like a big, smart, independent girl. The word “baby” didn’t cross my mind. It often crosses the lips of other kids who see her being pushed in her wheelchair, which is one reason I am hoping Abbie will get a power chair soon.

We’re still working through the process, but truly covet your prayers, as we haven’t even made it past the administrative review yet….they won’t start picking the request apart for medical necessity until we’re past the admin hurdle.

At the same appointment, we took a mold for a custom-fit side-lyer for Abbie to sleep in. Honestly, I was a bit ambivalent about this equipment, because it will be big and bulky. But, once I saw Abbie relax as the mold closed in around her…well, I don’t care if it’s a baby elephant if it will help her sleep well and get her spine into the best position! This will be a boon to our effort to prevent scoliosis.

An enlarged heart captures rays of joy that may fly above houses not yet renovated by trial!

The Volley

As we walked out of the mold appointment, I saw my little friend, Hailey, sitting in the hall. Her mom and I have struck up a hallway friendship over the years, as we are both Rehab frequent fliers. Hailey had an aggressive brain cancer, and required a surgery from which most children don’t recover their speech or ability to walk.

Hailey’s mom burst into tears of joy when I told her about Abbie’s power chair. I did the same when she told me that Hailey’s port was being taken out, and we marveled at her pink cheeks, regrowing hair, and ability to run down the hall, sporting a little chub around her tummy. What a far cry from the wan, weak, silent girl I met as she leaned on a tiny walker.

Hailey was struggling to open her milk, so I sat down to help her. “Hey!” I said, “You got your port out, didn’t you?”

Now distracted by opening the straw, Hailey didn’t really look up when she said, nonchalantly, “Well… I was going to, but before the surgery they had to do Xrays, and they found a tumor on my spine.”

I tried not to shriek or cry in front of her as the air was sucked from my lungs.

Her brother, Zachary, came bounding down the hall, eager to spring April Fools’ jokes…which included telling the staff he didn’t have school that day. April Fool’s! Followed by his sing-song voice saying, “But, Hailey really didn’t have school – she had chemo instead.”

My head was spinning as I realized it was all starting again for them. Fortunately, I suppose, Hailey’s dad was with her, as I think I would have dissolved upon seeing her mom.

An enlarged heart, knowing by name what lurks in the basement, does suffer more acutely as those they care about are called to descend the staircase once again. Please, please pray for sweet Hailey and her family.

The Promise

As we were finishing up our Spring Break trip last weekend, Genevieve got a very strange message on her phone. Her friend, Maria, was calling to check on Genevieve’s mom because she was expecting her hours earlier. Maria lives in Ewa, which is quite a ways from Genevieve’s home in Waimanalo. Her mom had been riding the bus to Ewa when she fell asleep. After she’d been riding for four hours, asleep, the driver tried to rouse her. She was unresponsive. Genevieve’s mom had a stroke at some point before she reached Ewa, but hours had passed since then — critical time for stroke treatment.

Genevieve’s mom has been on a ventilator since last Sunday. Although it seems that perhaps the imminent threat of her passing has abated, the picture remains very unclear. Would you join us in prayer for her healing, and for comfort for Genevieve and for her seven sisters and brother in the Philippines?

An enlarged heart knows that it knows that it knows that all His promises are true, and we cling to these with both determination and trust as new storms come.

May the Lord bless you, and may you welcome heart-renovation, even if it comes in overwhelming, painful packages. The Contractor can trusted, and the results will be worth it!